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Read conversations, start a discussion, and connect with others about rare diseases.

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Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...

FeaturedActive 7 days ago

What fills your cups on hard days?

Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...

Active today

I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?...

Active today

Hurler syndrome

My one-year old granddaughter has just been diagnosed with Hurler syndrome (MPS1). To say I am devastated is an understatement. I can;t stop crying. I feel so sorry for my...

Active 5 days ago

What are some of the biggest accessibility challenges you face in your daily life due to your rare disease?

Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing your thoughts or experiences about accessibility in the...

Active 7 days ago

Has Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease Discussion

Hi everyone, I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow, progressive vision loss. It typically starts with difficulty...

Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?

I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I was referred for further tests, and now the...

Dystonia, epilepsy or something else?

I gave been having worsening bilateral facial spasms 1-3x per day that last 2-5 minutes. They are preceded by light nausea and stomach gurgling, then left eyelid spasms and closes...

Feeling isolated and alone with a severe rare disease

My husband and I have tried to do many things to support our daughter diagnosed with metachromatic leukodystrophy, rare terminal brain disease 3.5 years ago. Since she has become very...

Undiagnosed: chest tightness and pressure in head

For the last 3 years my male partner of 8 years, who appears perfectly healthy, has been plagued by unexplained symptoms that even the Cleveland clinic, which he has visited...

Undiagnosed all season cold sensation of body

I'm 59 and I have a condition for over last 10 years that is now immensely impacting quality of my life. I feel cold getting absorbed throughout my body except...

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